BMC Ear, Nose and Throat

Disorders BioMed Central

Research article Open Access

Effects of total laryngectomy on olfactory function, health-related
quality of life, and communication: a 3-year follow-up study
Birgit Risberg-Berlin*1, Anna Rydén2, Riitta Ylitalo Möller3 and
Caterina Finizia4

Address: 1Division of Logopedics and Phoniatrics, Sahlgrenska University Hospital, SE-413 45 Göteborg, Sweden, 2Health Care Research Unit,
Sahlgrenska University Hospital, SE-413 45 Göteborg, Sweden, 3Karolinska Institute, Department of Otolaryngology B 53, Karolinska University
Hospital Huddinge, SE-141 86 Stockholm, Sweden and 4Department of Otolaryngology, Sahlgrenska University Hospital Mölndal, SE-431 80
Mölndal, Sweden
Email: Birgit Risberg-Berlin* - birgit.risberg-berlin@vgregion.se; Anna Rydén - anna.ryden@astrazeneca.com;
Riitta Ylitalo Möller - Riitta.Ylitalo@ki.se; Caterina Finizia - caterina.finizia@orlss.gu.se
* Corresponding author

Published: 29 July 2009 Received: 11 February 2009

Accepted: 29 July 2009
BMC Ear, Nose and Throat Disorders 2009, 9:8 doi:10.1186/1472-6815-9-8
This article is available from: http://www.biomedcentral.com/1472-6815/9/8
© 2009 Risberg-Berlin et al; licensee BioMed Central Ltd.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0),
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract
Background: As total laryngectomy results in loss of airflow through the nose, one of the adverse effects for a
majority of patients is the reduced or complete loss of olfactory function. However, with the introduction of a
new method, the Nasal Airflow-Inducing Maneuver (NAIM), an important technique is available for
laryngectomized patients to regain the ability to smell. The purpose of the present study was to assess changes
in olfaction, health-related quality of life (HRQL) and communication 3 years after NAIM rehabilitation.
Methods: 18 patients (15 men and 3 women; mean age, 71 years) who had undergone laryngectomy and NAIM
rehabilitation were followed longitudinally for 3 years. For comparison an age and gender matched control group
with laryngeal cancer treated with radical radiotherapy was included. Olfactory function was assessed using the
Questionnaire on Odor, Taste and Appetite and the Scandinavian Odor Identification Test. HRQL was assessed
by: 1) the European Organization for Research and Treatment for cancer quality of life questionnaires; and 2) the
Hospital Anxiety and Depression Scale. Communication was assessed by the Swedish Self-Evaluation of
Communication Experiences after Laryngeal Cancer. Descriptive statistics with 95% confidence interval were
calculated according to standard procedure. Changes over time as well as tests between pairs of study patients
and control patients were analyzed with the Fisher nonparametric permutation test for matched pairs.
Results: Thirty-six months after rehabilitation 14 of 18 laryngectomized patients (78%) were smellers. There
were, with one exception (sleep disturbances), no clinically or statistically significant differences between the
study and the control group considering HRQL and mental distress. However, statistical differences (p < 0.001)
were found between the study and the control group concerning changes in communication.
Conclusion: Olfactory training with NAIM should be integrated into the multidisciplinary rehabilitation program
after total laryngectomy. Our study shows that patients who were successfully rehabilitated concerning olfaction
and communication had an overall good HRQL and no mental distress. Moreover, the EORTC questionnaires
should be complemented with more specific questionnaires when evaluating olfaction and communication in
laryngectomized patients.

Page 1 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8
Background
Laryngeal cancer is the most common malignant tumor of
the upper aerodigestive tract. The clinical staging and the
site of the larynx cancer will indicate different forms of
treatment and consequently of rehabilitation with differ-
ent impacts on health-related quality of life (HRQL) [1].
In advanced laryngeal cancer and cases of recurrence a
total laryngectomy is mostly performed, resulting in a per-
manent disconnection of the upper and lower airways and
a wide range of adverse effects. This anatomical change
leads to loss of normal voice and deterioration in smell,
taste and pulmonary function, with associated psychoso-
cial problems affecting HRQL [2]. Despite the well known
side effect of smell deterioration in laryngectomized
patients effective rehabilitation in this area has only
recently become available with the Nasal Airflow-Induc-
ing Maneuver (NAIM), which so far has been evaluated in
Holland and Sweden [2-5]. In the Swedish NAIM rehabil-
itation studies the sense of smell improved rapidly in 72%
of the patients with anosmia or hyposmia after three
NAIM rehabilitation sessions and the results persisted at
12 month follow-up [4,5].
During the last decade HRQL assessment has become an
essential part of head and neck (H&N) cancer treatment
evaluation and there has been a dramatic increase recently
in the number of publications on HRQL following H&N
cancer. These publications reflect the importance of the
patient perspective as an outcome parameter in addition
to survival, recurrence or physical function, where patient
self-reported questionnaires are the mainstay of HRQL
evaluation [6]. The most common self-completed meas-
ures used in H&N cancer patients are the European Organ-
ization for Research and Treatment of Cancer (EORTC)
Quality of Life Questionnaires, proved to be statistically
valid instruments [7,8], with a general part addressing all
cancer patients (QLQ-C30) and a disease-specific H&N
cancer module (QLO-H&N35). However, recent research
has presented the need for adding more disease-specific
questionnaires when assessing HRQL in laryngectomized
patients in order to detect intervention-related changes
over time in communication, respiration and smell
[2,4,9,10].
By using the EORTC questionnaires in combination with
more disease-specific questionnaires, such as the Ques-
tionnaire on Odor, Taste and Appetite (QOTA) and the
Swedish Self-Evaluation of Communication Experiences
after Laryngeal Cancer (S-SECEL) we primarily wanted to
assess changes in olfaction, HRQL and communication
during a 3-year period in laryngectomized patients who
had received olfactory rehabilitation with the NAIM dur-
ing 2002–2005. An additional aim was to compare differ-
ences in olfactory function, HRQL and communication
between the laryngectomized study group and an age and
http://www.biomedcentral.com/1472-6815/9/8
gender matched control group of laryngeal cancer patients
with preserved larynx.
Methods
Subjects and design
Of the 24 patients initially included in the rehabilitation
program from 2002 through 2005, 18 were still alive and
all of them were included in the present study [4,5]. The
group consisted of 15 men and 3 women. Mean age was
71 years (range 57 – 83 years) and mean time since total
laryngectomy was 10 years and ranged from 5–34 years.
For comparison an age and gender matched control group
of 18 patients with laryngeal cancer treated with radical
radiotherapy, with preserved larynx and without any
NAIM training were identified from the clinical records at
the Department of Otolaryngology, Sahlgrenska Univer-
sity Hospital, Göteborg. All patients contacted agreed to
participate and were included in the study. Mean age for
the control group was 72 years (range 52 – 82 years) and
mean time since radical radiotherapy was 10 years (range
2–31 years). Patients in both groups reported normal
olfactory function before treatment of the H&N cancer
and none of the patients had had any head trauma or
severe respiratory infection resulting in olfactory deterio-
ration. Additional health problems (cardiovascular dis-
ease) were reported by one laryngectomized patient and
by two control patients. Patient characteristics are summa-
rised in Table 1.
For the laryngectomized patients (study group) data were
collected at baseline (i.e. before NAIM rehabilitation),
and at 6 and 36 months follow-up sessions after initial
rehabilitation in order to register changes in olfaction,
HRQL and communication. One patient was not fol-
lowed-up at 6 month due to concomitant disease. The
control group was only examined once. EORTC QLQ-C30
results from the study group were also compared to those
of a reference group, i.e. a random sample of 234 men
aged 70–79 in the Swedish population drawn from a pop-
ulation-based registry (SEMA) including all Swedish
inhabitants born between 1918 and 1979 [11].
The study was conducted in accordance with the Declara-
tion of Helsinki and was approved by the Ethical Board of
the Sahlgrenska University Hospital, Göteborg, Sweden.
Olfaction rehabilitation
During the primary rehabilitation period (2002–2005),
speech-language pathologists (including the author B R-
B) trained patients in the study group in the use of NAIM,
which creates a negative pressure in the oral cavity and
oropharynx to induce orthonasal airflow, thus enabling
odorous substances to reach the olfactory epithelium.
Patients were instructed to make an extended yawning by
lowering the jaw, floor of mouth, tongue, base of the
Page 2 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8 http://www.biomedcentral.com/1472-6815/9/8

Table 1: Sociodemographic and clinical characteristics of study population and matched controls

Characteristic Study population Matched controls

(n = 18) (n = 18)

Age, median years (range) 71 (57–83) 72 (52–82)

Last treatment mean years (range) 10.4 (5–34) 9.9 (2–31)
n (%) n (%)
Sex
Female 3 (17%) 3 (17%)
Male 15 (83%) 15 (83%)
Family situation
Married/Cohabitant 12 (67%) 14 (78%)
Smoking
Never smoked 3 (17%) 1 (6%)
Stopped smoking > 1 year 14 (77%) 15 (83%)
Smoker 1 (6%) 2 (11%)
Health problems
Cardiovascular disease 1 (6%) 2 (11%)
Pulmonar disease 0 (0%) 0 (0%)
Other malignancy 3 (17%) 0 (0%)
Communication
Alaryngeal voice
Prostheses 10 (56%)
Esophageal 2 (11%)
Electrolarynx 5 (28%)
Pseudowhisper 1 (5%)
Laryngeal voice 18 (100%)

tongue, and soft palate, while the lips are closed. Three
intervention sessions were performed during 6 weeks.
Patients were instructed to actively use the maneuver as
frequently as possible and try to integrate it into daily life
after the primary rehabilitation period and repetition at
the 6-month follow-up [4,5].
Examination
The Scandinavian Odor Identification Test (SOIT)
Olfactory function was tested with the Scandinavian Odor
Identification Test (SOIT) [12]. This test has age and gen-
der related cut-off scores and categorizes the sense of smell
in 3 diagnoses: normosmia, hyposmia, or anosmia. The
cut-off scores used in this study for age group 55 to 74
years were ≤7 points for anosmia, 8–10 for hyposmia and
11–16 for normosmia. On the basis of performance on
the SOIT, patients were categorized as smellers or non-
smellers. Smellers were patients having a diagnosis of
functional hyposmia or normosmia and non-smellers
were patients with anosmia.
Semi-structured interview
A semi-structured interview including questions on smell
and taste was conducted at each session. Calculated scale
scores ranged from 0 to 100, where 0 corresponded with
"very bad" and 100 with "very good". In addition, the
active use of NAIM was asked for. This procedure is
described in more detail in Risberg-Berlin et al 2006 [5].
Questionnaires
Five structured self-reported questionnaires were used for
olfactory assessment, HRQL and communication: 1)
Questions on Odor, Taste and Appetite (QOTA); 2) The
European Organization for Research and Treatment of
Cancer (EORTC) Quality of Life Core Questionnaire
(QLQ-C30); 3) The EORTC Quality of Life Head and Neck
Module (EORTC QLQ-H&N35); 4) The Hospital Anxiety
and Depression Scale (HADS); and 5) The Swedish Self-
Evaluation of Communication Experiences after Laryn-
geal Cancer questionnaire (S-SECEL). Completion of the
questionnaires including olfactory testing took approxi-
mately 2 hours.
The Questionnaire on Odor, Taste and Appetite (QOTA)
QOTA have demonstrated satisfactory validity and relia-
bility and consists of several multiple-choice questions
addressing both the pre- and post treatment situations as
well as the present situation. Questions are divided into 5
scales: 1) present taste perception (8 items; score range 8–
40); 2) appetite (6 items; score range 6–30); 3) present
odor perception (POPS), (3 items; score range 3–15); 4)
present odor perception compared with past (3 items;
score range 3–15); and 5) daily feelings of hunger (9
items; score range 9–45). A low score indicates poor func-
tion or deterioration of these functions compared to pre-
treatment scores. Conversely, a high score indicates good
function or improvement in these functions [13].

Page 3 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8
The European Organization for Research and Treatment of Cancer
(EORTC QLQ-C30 and EORTC QLQ-H&N35)
EORTC QLQ-C30. This 30-item questionnaire is a widely
used, cancer-specific, patient-based measure designed for
self-administration. The QLQ-C30 was used to assess
patients' HRQL, including general physical and psychoso-
cial functioning and symptoms [7]. To address symptoms
associated specifically with head and neck cancer and its
treatment we used the complementary 35-item EORTC
H&N Module (QLQ-H&N35) [8]. Both questionnaires
have demonstrated satisfactory reliability and validity
when tested in large, cross-cultural samples of cancer and
H&N cancer patients. Calculated scores for C30 and
H&N35 range from 0–100, with 100 indicating maximum
functioning (functioning scales and global HRQL) or
worst symptoms (symptom scales and items) [8]. HRQL
scores were calculated according to the QLQ-C30 scoring
manual [14] and a difference (Δ) of 10 points or more was
regarded as clinically significant [15].
The Hospital Anxiety and Depression Scale (HADS)
The HAD scale measures general distress [16]. It consists
of 14 items on a four-point response scale that are
summed up to separate scores on anxiety and depression.
Each person is also grouped according to a clinically tested
classification of psychiatric morbidity. A scale score of less
than 8 is in the normal range, a score 8 to 10 indicates a
possible case, and a score greater than 10 indicates a prob-
able mood disorder. The Swedish version has been docu-
mented in several studies [9,17].
The Swedish Self-Evaluation of Communication Experiences after
Laryngeal Cancer (S-SECEL)
The original Self-Evaluation of Communication Experi-
ences after Laryngectomy (SECEL) was developed to
assess communication dysfunction in patients with laryn-
gectomies and has demonstrated satisfactory psychomet-
ric properties [18]. The Swedish version (S-SECEL) was
adapted for use in patients receiving different treatments
for laryngeal cancer and has proved reliable and shown
both convergent and discriminant validity and satisfac-
tory internal consistency [9,19]. S-SECEL consists of 35
items addressing communication experiences and dys-
function in patients receiving different treatments for
laryngeal cancer. Thirty-four of the items are aggregated
into 3 subscales to measure general (5 items; score range
0–15), environmental (14 items; score range 0–42) and
attitudinal (15 items; score range 0–45) communication
experiences, as well as a total scale (score range 0–102).
Each item is rated on a 4-point scale ranging from 0
(never) to 3 (always) and scoring of subscales and a total
scale is carried out by simple addition (0–102 p). A higher
score indicates greater perceived communication dysfunc-
tion. Item no. 35: "Do you talk as much now as before
your laryngeal cancer?" is answered by three response cat-
http://www.biomedcentral.com/1472-6815/9/8
egories (Yes/More/Less), and is not included in the scor-
ing system.
Statistical analysis
Descriptive statistics with 95% confidence interval (CI)
were calculated according to standard procedure. Changes
over time as well as tests between pairs of study patients
and control patients were analyzed with the Fisher non-
parametric permutation test for matched pairs. When esti-
mating clinical significance in the EORTC questionnaires,
changes over time within the study group and differences
in mean scores between groups were assessed according to
recommendations by Osoba, where a difference in HRQL
scores of 10 points or more is regarded clinically signifi-
cant [15]. All tests were 2-tailed and conducted at a 5%
significance level. [20].
Results
Subjects
There were no significant differences between the study
and the control group regarding radiation dose given
(Gray) or socio-demographic and clinical characteristics
(Table 1), with the exception of mode of communication.
Olfaction
SOIT score and categories
Results of the olfactory function over time according to
SOIT scores and categories are presented in Table 2. At
baseline 11 patients (61%) were categorized as non-
smellers, i.e. had anosmia, while 7 patients (39%) were
smellers; normosmia (n = 5) and hyposmia (n = 2). In two
of the non-smellers (anosmia) and four of the smellers
(normosmia) the SOIT category did not change over time.
At 6-month follow-up 7 of the 10 non-smellers (70%)
became smellers (hyposmia). One patient could not be
examined at this time point due to concomitant disease.
At 36-month follow-up 14 of 18 patients (78%) were cat-
egorized as smellers; normosmia (n = 8) and hyposmia (n
= 6), while 4 patients (22%) still were non-smellers (anos-
mia).
The SOIT score improvement over time within the study
group was statistically significant (p = 0.029, p = 0.003
respectively).
Patients' self-estimation and QOTA
According to patients' self-estimation of smell significant
improvements in olfactory function compared to baseline
were seen at 6 and 36 month follow-up (p < 0.001), and
for taste at 6 month follow-up (p = 0.039). A significant
improvement over time was also found according to the
QOTA scales "Present sense of smell", "Appetite" (6 and
36 month) and "Taste" (6 month).
Page 4 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8 http://www.biomedcentral.com/1472-6815/9/8

Table 2: Score changes from pretreatment (baseline) to 36 months posttreatment in study population and control patients

Mean (95% CI) Score

Characteristic Study population Controls p study/control

(n = 18) (n = 18)
Baseline 6 mo p 36 mo p

SOIT scorea 7.2 (5.1–9.2) 9.4 (7.6–11.3) .03 9.5 (7.7–11.3) .003 13.7 (13.1–14.3) < .001
Patients' self-estimationb
Present olfaction 25.9 (11.7–40.2) 63.7 (52.3–75.2) < .001 55.6 (42.5–68.6) < .001 76.5 (65.5–87.4) .007
Present gustation 67.6 (51.2–84.0) 81.4 (69.7–93.1) .04 78.7 (63.7–93.7) .20 83.3 (76.6–90.1) .36
QOTAc
Taste 26.3 (24.3–28.4) 28.1 (25.9–30.3) .01 27.2 (24.7–29.7) .53 29.5 (28.2–30.8) .09
Appetite 22.4 (20.7–24.1) 22.8 (21.0–24.7) .26 23.1 (21.5–24.6) .51 23.4 (22.3–24.6) .72
POPS 7.9 (6.0–9.8) 9.4 (8.4–10.5) .02 9.6 (8.2–10.9) .03 12.8 (11.8–13.8) < .001
Present sense of smell compared 5.4 (4.3–6.6) 7.4 (5.6–9.2) .03 6.3 (4.9–7.8) .06 10.0 (9.1–10.9) < .001
with pretreatment
Daily feelings of hunger 32.0 (30.2–33.8) 32.1 (30.5–33.7) .79 32.1 (29.8–34.4) .97 33.6 (31.8–35.4) .67

Abbreviations: CI, confidence interval;

aSOIT, Scandinavian Odor-Identification Test. Score range, 11–16 for normosmia, 8–10 for hyposmia, and ≤ 7 for anosmia;
bPatients' self-estimation; Score range, 0–100, where 0 corresponds to worst perceived smell and taste;
c QOTA = Questionnaire on Olfaction, Taste and Appetite; Taste, 8 items, score range per item, 8 to 40; Appetite, 6 items, score range per item,
6 to 30; POPS, 3 items, score range per item, 3 to 15; Present sense of smell vs. preoperative, 3 items, score range per item 3 to 15; Daily feelings
of hunger, 9 items, score range per item, 9 to 45. A low score indicates bad function or deterioration of these compared with the pretreatment
situation.

Use of the NAIM QLQ-H&N35

At the 36-month follow-up, 12 of 18 patients (67%) were Table 4 shows results of the EORTC QLQ-H&N35. In gen-
active users of the olfactory technique and used it "auto- eral, score values were stable for the study population
matically", i.e. on a daily basis. Of the 6 patients not using across all measurement points, except for a clinically sig-
NAIM, 2 were smellers and 4 non-smellers. nificant deterioration for sexuality (Δ 10).

Study group vs. control group
The matched controls were all smellers (normosmia n =
18) and scored significantly better than the study group
according to SOIT (p < 0.001), Table 2. The QOTA scales
"Present sense of smell", "Appetite" and "Present sense of
smell compared to before treatment" also showed signifi-
cantly better results in the controls than in the study group
(p < 0.001), Table 2.
Questionnaires
EORTC
QLQ-C30
EORTC OLQ-C30 results are presented in Table 3. No sig-
nificant within-group differences were found for the study
group over time. Additionally, when comparing the study
group with the controls no significant between-group dif-
ferences were found with the exception for the symptom
"Sleep disturbances" (Δ 13) in favour of the controls, i.e.
less disturbed sleep.
However, when the study group was divided into smellers
and non-smellers (data not shown) a clinically significant
difference was found in the following scales and items:
Senses (Δ 20); Speech (Δ 10); Dry mouth (Δ 11); and
Sticky saliva (Δ 36), all in favour of the smellers.
When comparing the study group with the controls both
clinically and statistically significant differences were
found in Senses scale (Δ 24, p = 0.002; less disturbed in
the controls) and for Sexuality (Δ 17, p = 0.016; less dis-
turbed in the study group).
HADS
At all measurement points score values were stable and
low for the study group. At follow-up (36 months) the
study group reported possible/probable anxiety or depres-
sion disorder in 0% and 6%, respectively. Corresponding
values for the controls were 11% and 0% for possible/
probable anxiety or depression.

When compared with the reference group, the study group S-SECEL
scored higher on 9 of the 15 scales and single items in No significant differences in S-SECEL scores were shown
EORTC C30 [11]. However, these differences were not for the study group over time and most communication
clinically significant. problems were found in the Environmental scale, Table 5.

Page 5 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8 http://www.biomedcentral.com/1472-6815/9/8

Table 3: Mean values (95% CI) of EORTC QLQ-C30 scores from pretreatment (baseline) to 36 months posttreatment in study- and
control patients

Mean (95% CI) Score

Scale name Study population Controls p study/control Norm dataa

(n = 18) (n = 18)
Baseline 6 mo p 36 mo p

Functional scales
Physical 88.9 (84.2–93.6) 89.4 (83.1–95.7) .52 85.9 (79.5–92.4) .31 91.1 (86.3–95.9) .07 81.6
Role 93.5 (86.5–100.6) 85.3 (76.8–93.8) .16 86.1 (72.1–100.1) .28 90.7 (83.1–98.4) .69 82.6
Emotional 94.9 (90.4–99.4) 90.2 (84.3–96.1) .09 91.2 (85.6–96.8) .18 92.1 (85.0–99.3) .85 88.2
Cognitive 94.4 (90.4–98.5) 97.1 (93.7–100.4) .25 98.2 (94.2–102.1) .22 92.6 (85.5–99.7) .06 85.2
Social 94.4 (88.1–100.9) 90.2 (80.6–99.8) .53 85.2 (73.2–97.2) .18 90.7 (83.1–98.4) .44 89.1
Global QLQ 85.7 (78.9–92.4) 79.4 (69.1–89.7) .27 80.6 (72.2–89.0) .12 82.9 (76.4–89.3) .54 76.4
Symptom scales
Fatigue 9.9 (3.6–16.1) 15.0 (6.5–23.6) .11 14.8 (7.7–21.9) .14 14.8 (8.8–20.8) .84 21.5
Nausea and vomiting 0.9 (-1.0–2.9) 1.0 (-1.1–3.1) .98 1.9 (-0.8–4.5) .93 0.9 (-1.0–2.9) b 2.5
Pain 5.6 (-0.8–11.9) 3.9 (0.2–7.7) .75 13.9 (3.5–24.2) .11 13.0 (4.2–21.8) .88 19.2
Symptom single
items
Dyspnoea 29.6 (20.0–39.3) 33.3 (24.8–41.9) .25 27.8 (17.5–38.0) .75 24.1 (14.6–33.6) .38 23.7
Sleep disturbances 22.2 (5.2–39.3) 19.6 (6.0–33.2) .95 20.4 (6.3–34.5) .95 7.4 (-1.7–16.5) .20 11.8
Appetite loss 1.9 (-2.1–5.8) 2.0 (-2.2–6.1) b 0.0 (..) b 1.9 (-2.1–5.8) b 2.7
Constipation 5.6 (-3.0–14.1) 7.8 (-1.8–17.5) .50 7.4 (0.3–14.5) .50 7.4 (0.3–14.5) .72 6.7
Diarrhoea 0.0 (..) 3.9 (-1.8–9.6) d 3.7 (-1.7–9.1) d 5.6 (-0.8–11.9) >.99 4.2
Financial problems 1.9 (-2.1–5.8) 0.0 (..) b 0.0 (..) c 0.0 (..) >.99 5.4

Abbreviations: CI, confidence interval; EORTC, The European Organization for Research and Treatment of Cancer Core Questionnaire (C30)
scale: range per scale: 0–100 where 100 corespond to maximum functioning. Symptom scales and items; where 100 correspond to worst
symptoms. Clinically significant change, i.e. a change of ≥10 points.
a Reference values for EORTC QLQ-C30 for 234 men aged 70–79 in the Swedish population drawn from a population-based registry (SEMA)
including all Swedish inhabitants born between 1918 and 1979 [11].
b The number of observations after zeros is removed as it is 1 so there is no use calculating the p-value
c The number of observations after zeros is removed as it is 0 so there is no use calculating the p-value
d The number of observations after zeros is removed as it is 2 so there is no use calculating the p-value

When the study group was divided into smellers and non-
smellers, results from baseline, 6 and 36 month follow-up
showed that non-smellers deteriorated over time accord-
ing to total S-SECEL mean values (24.1; 26.7 and 35.1),
whereas smellers improved (26.6; 22,6 and 21,6).
The study group as a whole reported more problems with
speech and communication than the controls. Statistical
significance was noted for all scales with the exception of
the General subscale. The largest difference between the
groups was found in the Attitudinal subscale.
Discussion
The present study has a longitudinal design and is to our
knowledge the first study to assess olfactory rehabilitation
with NAIM and HRQL in laryngectomized patients over a
period of 3 years.
Important findings in this study were the continued
improvement of olfactory function after NAIM rehabilita-
tion both according to SOIT and patients' self-estimation
of smell during a 3-year period. This study confirms our
previous results, i.e. the importance of follow-up and rep-
etition of the NAIM [4] to make the technique a patient
automatism with integration in daily life, resulting in pos-
itive effects for patients concerning for example food and
cooking, odors in nature and personal hygiene. Six
patients (2 smellers and 4 non-smellers) did not use the
technique regularly. Among these patients the smellers
reported good olfaction. One was an esophageal speaker
and the other one had found his own smelling technique,
similar to the NAIM. Reasons for the non-smellers (n = 4)
not to use the NAIM was finding it too conspicuous in
public, difficult to apply, bad motivation to learn or poor
general health.
Contrary to what could be expected, our laryngectomized
patients reported HRQL scores comparable to those of the
controls, and better HRQL than reported in previous stud-
ies in laryngectomized patients [1,17,21]. This might be
explained by several factors. The majority (83%) of the
study group was successfully rehabilitated and all patients
had completed their therapy concerning communication,
breathing and swallowing. The time interval between

Page 6 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8 http://www.biomedcentral.com/1472-6815/9/8

Table 4: Mean values (95% CI) of EORTC QLQ-H&N35 scores from pretreatment (baseline) to 36 months posttreatment in study- and
control patients

Mean (95% CI) Score

Scale name Study population Controls p study/control

(n = 18) (n = 18)
Baseline 6 mo p 36 mo p

Symptom scales
Pain 0.0 (..) 5.8 (-2.0–13.7) .25 6.5 (-0.4–13.4) .06 3.2 (-1.1–7.5) .44
Swallowing 8.8 (0.1–17.5) 4.9 (0.6–9.2) >.99 13.9 (2.2–25.6) .34 8.3 (-0.7–17.3) .18
Senses 35.2 (21.9–48.5) 31.4 (18.9–43.8) .67 31.5 (17.9–45.1) .62 7.4 (-1.2–16.0) .002
Speech 13.6 (6.1–21.1) 9.2 (4.5–13.8) .36 14.8 (6.3–23.3) .70 13.6 (7.4–19.7) .76
Social eating 6.0 (0.7–11.3) 1.5 (-0.2–3.2) .16 13.9 (-0.2–28.0) .21 6.9 (-4.8–18.7) .16
Social contact 5.9 (1.7–10.2) 2.8 (-0.9–6.4) .25 5.2 (0.4–10.0) .88 3.0 (-1.9–7.8) .50
Sexuality 11.1 (3.1–19.2) 10.8 (1.2–20.3) .88 22.6 (7.1–38.0) .13 39.8 (21.8–57.8) .02
Symptom single items
Teeth 9.3 (-4.4–23.0) 2.0 (-2.2–6.1) b 9.3 (1.6–16.9) >.99 7.4 (-1.7–16.5) .88
Opening mouth 1.9 (-2.1–5.8) 3.9 (-1.8–9.6) a 9.3 (-3.2–21.7) .25 0.0 (..) .25
Dry mouth 11.1 (1.3–21.0) 11.8 (3.3–20.2) .75 16.7 (2.5–30.9) .38 13.0 (1.4–24.5) .61
Sticky saliva 14.8 (3.1–26.5) 9.8 (1.8–17.9) .73 22.2 (5.2–39.3) .36 18.5 (5.5–31.5) .52
Coughing 16.7 (6.4–26.9) 17.7 (8.8–26.5) .72 16.7 (6.4–26.9) .72 20.4 (7.5–33.3) .62
Felt ill 3.7 (-4.1–11.5) 5.9 (-0.9–12.6) >.99 3.7 (-1.7–9.1) b 5.6 (-3.0–14.1) .88
Senses scale separated on item
level
Problems with olfaction 55.6 (35.1–76.1) 43.1 (26.3–60.0) .32 44.4 (26.5–62.4) .30 13.0 (-2.2–28.2) .004
Problems with taste 14.8 (1.8–27.8) 19.6 (4.7–34.5) .38 17.7 (1.5–33.8) .68 1.9 (-2.1–5.8) .06

Abbreviations: CI, confidence interval; EORTC, The European Organization for Research and Treatment of Cancer Head & Neck Module (H&N35)
range per symptom scale: 0–100, where 100 correspond to worst symptoms. Clinically significant change, i.e. a change of ≥ 10 points.
a The number of observations after zeros is removed as it is 1 so there is no use calculating the p-value
b The number of observations after zeros is removed as it is 2 so there is no use calculating the p-value

laryngectomy or radiotherapy and the start of our study
also allowed patients' recovery from anatomic and func-
tional alterations independent of treatment alternative. In
a study by Birkhaug et al. a positive association was
reported between level of activity within the Norwegian
Society of Laryngectomies and HRQL scores [21]. Eleven
of our study patients (61%) were members of a patient
organization, which might have influenced the HRQL.
Furthermore, somewhat surprisingly, both the study and
control group reported better HRQL when compared to a
Table 5: Mean values (95% CI) for S-SECEL total and subscale scores from pretreatment (baseline) to 36 months posttreatment in
study- and control patients
reference group including data from a general age-
matched Swedish normal population sample [11].
In the present study only few differences were found in the
EORTC QLQ-H&N35 module between the laryngect-
omized study group and the control group treated with
radiotherapy, results also confirmed in other studies
[1,17,22]. However, an interesting finding in the study
group concerns one of the two questions in the Senses
scale, "Problems with smell", that displayed a clinically
significant change after NAIM rehabilitation, whereas the

Mean (95% CI) Score

Scale name Study population Controls P study/control

(n = 18) (n = 18)
Baseline 6 mo p 36 mo p

Generala 4.2 (3.0–5.5) 4.8 (3.4–6.3) .57 4.3 (3.2–5.5) .91 3.8 (2.8–4.9) .55
Environmenta 13.4 (11.0–15.9) 12.4 (9.5–15.4) .48 14.8 (10.7–18.9) .57 7.6 (4.8–10.4) .006
Attitudinala 7.4 (5.2–9.6) 7.8 (4.3–11.4) .88 10.7 (6.8–14.7) .17 1.7 (0.5–2.8) < .001
Totala 25.1 (20.2–29.9) 25.1 (19.1–31.2) > .99 29.8 (21.7–37.9) .27 13.1 (9.2–16.9) < .001

Abbreviations: CI, confidence interval;

S-SECEL, The Swedish Self-Evaluation of Communication Experiences after Laryngeal Cancer;
a Min-max: 0–15 (general), 0–42 (environmental), 0–45 (attitudinal), and 0–102 (total). A low value indicates better communication

Page 7 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8
Senses scale (also including "Problems with taste") did
not. Bindewald et al. [23] suggested that these two items
should be analysed separately since the scale has previ-
ously shown low internal consistency [8,23]. We agree
with Bindewald et al. as this would be especially relevant
in laryngectomized patients due to the varying meaning of
the questions for these patients. Furthermore, a divided
Senses scale may have increased the sensitivity to capture
olfaction improvement over time in our study group. An
alternative could be to use the QOTA, a questionnaire
with more items on olfaction, taste and appetite that cap-
tured significant changes over time concerning important
aspects for the study patients. However, this questionnaire
consists of 29 questions and the amount of patient-
reported questions should always be carefully considered
when deciding which questionnaires to use in research
studies as well as in clinical settings.
From our results it could be argued that the QLQ-H&N35
questionnaire also lacks in sensitivity regarding the
Speech scale. In the study group, with alaryngeal commu-
nication, a higher score on this scale could be expected,
i.e. more speech and communication problems, but
instead they scored equally to the control group with
laryngeal communication (mean EORTC values of 14.8
and 13.6 respectively). However, a significant difference
between the study and control group clearly indicated that
the laryngectomized patients perceived greater speech and
communication problems. The poor sensitivity of the
speech scale in the QLQ-H&N35 module are findings in
line with those of several other studies, suggesting the
need to use additional questionnaires to capture changes
over time for specific symptoms such as communication,
respiratory and smell problems, especially in laryngect-
omized patients [1,9,10].
Another communication finding was that according to the
total S-SECEL score patients categorized as smellers also
seemed to judge themselves as more successfully rehabili-
tated concerning communication then non-smellers did.
It might be suggested that there is a connection between
good voice production and olfactory technique in laryn-
gectomized patients.
Neither the study, nor the control group reported any anx-
iety or depression, and these findings are in line with
other studies with laryngeal cancer patients [9,10]. Only
one of the study patients exceeded the cut-off value for
depression at 36-month follow-up which might be related
to problems with swallowing (use of gastric feeding tube)
and communication (pseudo whisper).
A limitation in our study is the small number of patients
since this did not allow for comparisons between gender
or time since start/end of treatment. As the majority of our
http://www.biomedcentral.com/1472-6815/9/8
patients were well rehabilitated (communication, breath-
ing, swallowing and social life) and highly motivated to
participate in the study the high HRQL results may be due
to selection bias. However, the 11 patients in our catch-
ment area not participating in the NAIM rehabilitation
study, had better self-estimated olfaction and similar
HRQL results at study start than the study group, indicat-
ing a minor risk of a selection bias [5]. An additional
explanation for the different results may be coping strate-
gies and psycho-social factors of H&N cancer patients and
their adaptation to living with the disease with time
[24,25].
Conclusion
Our study shows that laryngectomized patients who were
successfully rehabilitated concerning smell and commu-
nication had an overall good HRQL and no mental dis-
tress.
We recommend that olfactory testing and training with
NAIM should be integrated into the multidisciplinary
rehabilitation program after total laryngectomy.
Furthermore, our results show the use of additional vali-
dated survey instruments to the EORTC questionnaires
when evaluating specific functions such as olfaction and
communication in laryngectomized patients.
Competing interests
The authors declare that they have no competing interests.
Authors' contributions
The individual contributions of the authors to the manu-
script: 1) BRB, AR and CF have made substantial contribu-
tions to conception and design, acquisition of data,
analysis and interpretation of data; 2) BRB and CF has
been involved in drafting the manuscript and AR and
RYM in revising it critically for important intellectual con-
tent; and 3) All authors have read and approved the ver-
sion to be published.
Acknowledgements
Additional contributions: Claes Österlind, SLP; Ulla-Britt Tengstrand, SLP;
and Inger Johansson, SLP, in Västra Götaland County, Sweden, provided
excellent assistance during the examination of the patients.
Funding/Support: This study was supported by the Assar Gabrielsson Foun-
dation, Göteborg, Sweden; the Laryng Foundation, Stockholm, Sweden; the
Research and Development Council (FoU), Västra Götaland County, Swe-
den; and the Medical Faculty of Göteborg University.
References
1. Hanna E, Sherman A, Cash D, Adams D, Vural E, Fan CY, Suen JY:
Quality of life for patients following total laryngectomy vs
chemoradiation for laryngeal preservation. Arch Otolaryngol
Head Neck Surg 2004, 130(7):875-879.
2. Hilgers FJ, van Dam FS, Keyzers S, Koster MN, van As CJ, Muller MJ:
Rehabilitation of olfaction after laryngectomy by means of a
Page 8 of 9
(page number not for citation purposes)
BMC Ear, Nose and Throat Disorders 2009, 9:8 http://www.biomedcentral.com/1472-6815/9/8

nasal airflow-inducing maneuver: the "polite yawning" tech- 22. Boscolo-Rizzo P, Maronato F, Marchiori C, Gava A, Da Mosto MC:
nique. Arch Otolaryngol Head Neck Surg 2000, 126(6):726-732. Long-term quality of life after total laryngectomy and post-
3. Hilgers FJ, Jansen HA, Van As CJ, Polak MF, Muller MJ, Van Dam FS: operative radiotherapy versus concurrent chemoradiother-
Long-term results of olfaction rehabilitation using the nasal apy for laryngeal preservation. Laryngoscope 2008,
airflow-inducing ("polite yawning") maneuver after total 118(2):300-306.
laryngectomy. Arch Otolaryngol Head Neck Surg 2002, 23. Bindewald J, Oeken J, Wollbrueck D, Wulke C, Dietz A, Herrmann E,
128(6):648-654. Schwarz R, Singer S: Quality of life correlates after surgery for
4. Risberg-Berlin B, Moller RY, Finizia C: Effectiveness of olfactory laryngeal carcinoma. Laryngoscope 2007, 117(10):1770-1776.
rehabilitation with the nasal airflow-inducing maneuver after 24. Manuel GM, Roth S, Keefe FJ, Brantley BA: Coping with cancer. J
total laryngectomy: one-year follow-up study. Arch Otolaryngol Human Stress 1987, 13(4):149-158.
Head Neck Surg 2007, 133(7):650-654. 25. Mehanna HM, De Boer MF, Morton RP: The association of psy-
5. Risberg-Berlin B, Ylitalo R, Finizia C: Screening and rehabilitation cho-social factors and survival in head and neck cancer. Clin
of olfaction after total laryngectomy in Swedish patients: Otolaryngol 2008, 33(2):83-89.
results from an intervention study using the Nasal Airflow-
Inducing Maneuver. Arch Otolaryngol Head Neck Surg 2006,
132(3):301-306. Pre-publication history
6. Rogers SN, Ahad SA, Murphy AP: A structured review and The pre-publication history for this paper can be accessed
theme analysis of papers published on 'quality of life' in head here:
and neck cancer: 2000–2005. Oral Oncol 2007, 43(9):843-868.
7. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ,
Filiberti A, Flechtner H, Fleishman SB, de Haes JC, et al.: The Euro- http://www.biomedcentral.com/1472-6815/9/8/prepub
pean Organization for Research and Treatment of Cancer
QLQ-C30: a quality-of-life instrument for use in interna-
tional clinical trials in oncology. J Natl Cancer Inst 1993,
85:365-376.
8. Bjordal K, Hammerlid E, Ahlner-Elmqvist M, de Graeff A, Boysen M,
Evensen JF, Biorklund A, de Leeuw JR, Fayers PM, Jannert M, et al.:
Quality of life in head and neck cancer patients: validation of
the European Organization for Research and Treatment of
Cancer Quality of Life Questionnaire-H&N35. J Clin Oncol
1999, 17(3):1008-1019.
9. Johansson M, Ryden A, Finizia C: Self evaluation of communica-
tion experiences after laryngeal cancer – a longitudinal ques-
tionnaire study in patients with laryngeal cancer. BMC Cancer
2008, 8:80.
10. Op de Coul BM, Ackerstaff AH, van As CJ, Hoogen FJ van den, Meeu-
wis CA, Manni JJ, Hilgers FJ: Quality of life assessment in laryn-
gectomized individuals: do we need additions to standard
questionnaires in specific clinical research projects? Clin
Otolaryngol 2005, 30(2):169-175.
11. Michelson H, Bolund C, Nilsson B, Brandberg Y: Health-related
quality of life measured by the EORTC QLQ-C30 – reference
values from a large sample of Swedish population. Acta Oncol
2000, 39(4):477-484.
12. Nordin S, Bramerson A, Liden E, Bende M: The Scandinavian
Odor-Identification Test: development, reliability, validity
and normative data. Acta Otolaryngol 1998, 118(2):226-234.
13. de Jong N, Mulder I, de Graeff C, van Staveren W: Impaired sen-
sory functioning in elders: the relation with its potential
determinants and nutritional intake. J Gerontol A Biol Sci Med Sci
1999, 54(8):324-331.
14. Fayers P, Aaronson NK, Bjordal K, Sullivan M: EORTC Quality of
Study Group. EORTC Scoring Manual. Brussels, Belgium:
EORTC Data Center; 1995.
15. Osoba D, Rodrigues G, Myles J, Zee B, Pater J: Interpreting the sig-
nificance of changes in health-related quality-of-life scores. J
Clin Oncol 1998, 16(1):139-144.
16. Zigmond AS, Snaith RP: The Hospital Anxiety and Depression
Scale. Acta Psychiatr Scand 1983, 67:361-370.
17. Finizia C, Hammerlid E, Westin T, Lindstrom J: Quality of life and
voice in patients with laryngeal carcinoma: a posttreatment Publish with Bio Med Central and every
comparison of laryngectomy (salvage surgery) versus radio-
therapy. Laryngoscope 1998, 108(10):1566-1573. scientist can read your work free of charge
18. Blood G: Development and Assessment of a Scale Addressing "BioMed Central will be the most significant development for
Communication Needs of Patients With Laryngectomies. disseminating the results of biomedical researc h in our lifetime."
AJSLP 1993:82-90.
19. Finizia C, Bergman B, Lindstrom J: A cross-sectional validation Sir Paul Nurse, Cancer Research UK
study of Self-Evaluation of Communication Experiences Your research papers will be:
after Laryngeal Cancer – a questionnaire for use in the voice
rehabilitation of laryngeal cancer patients. Acta Oncol 1999, available free of charge to the entire biomedical community
38(5):573-580. peer reviewed and published immediately upon acceptance
20. Good P: A practical guide to resampling methods for testing
hypotheses. Springer: New York; 2000:45-52. cited in PubMed and archived on PubMed Central
21. Birkhaug EJ, Aarstad HJ, Aarstad AK, Olofsson J: Relation between yours — you keep the copyright
mood, social support and the quality of life in patients with
laryngectomies. Eur Arch Otorhinolaryngol 2002, 259(4):197-204. Submit your manuscript here: BioMedcentral
http://www.biomedcentral.com/info/publishing_adv.asp

Page 9 of 9
(page number not for citation purposes)